Thursday, March 18, 2010

Parents of kids with special needs know what it's like to live with chronic stress. Amy Baskin became one of those moms when her younger daughter was diagnosed with autism 14 years ago. As she traipsed from specialist to specialist, she noticed she looked like all the others moms in the waiting rooms: exhausted and overwhelmed. She searched for a book that would help her take care of herself while she tried to get the best help for her daughter. But she couldn’t find one. So she wrote More than a Mom: Living a Full and Balanced Life when your Child has Special Needs.

With co-author Heather Fawcett, Amy surveyed over 500 North American moms of kids with special needs, looked at research on families of kids with disabilities, and spoke to health and career experts about how mothers can hold onto their physical and mental health while navigating the demanding and often unpredictable world of child disability.

Look for a full interview with Amy in the June print issue of BLOOM. Here, we talk about why balance is critical – yet often elusive – for moms of kids with special needs, and what you can do to take the first step.

BLOOM: Why did you decide to write this book?

Amy Baskin: When I was first searching for ways to help my daughter, I never heard about resources and supports for me as a mom and a professional. I had this fantasy that when your child is diagnosed, you'd be told: "Here is a plan for your child. And here is your personal life coach, fitness coach, career coach, and the person who will help with your marriage and make sure everything is on track." Those coaches didn't exist, so we wrote the book.

BLOOM: What does research tell us about the unusual stresses that come with special-needs parenting?

Amy Baskin: We looked at old studies and the most current ones, and one thing they find over and over again is that challenging behaviour is most stressful. Physical and medical care isn’t easy, but from a stress point of view, behaviour is a huge issue. Then there are the multiple roles mothers have. Even if the mom is working full-time, she’s usually doing all the case management: booking the appointments, managing the child’s care, dealing with the school, managing behaviour, doing the emotional work. The Roeher Institute found that moms put in an average of 20 to 30 hours of personal care for their special-needs child on top of workforce and other family and household responsibilities. With that extra load comes little time for self-care. And no matter how positive we are, we all worry about what will happen in the future, when we’re no longer there for our child. So there’s too much to do, lots of stress, worries about the future and a lack of control. One study found that parents of children who are chronically ill have cellular content that is like a person 10 years older; stress ages them at a cellular level. The other big contributor to stress is that daily life in our community is designed for a typical kid. If I want to send my typical kid to camp, I phone the camp, get the information, fill out the form and away she goes. If I want to send my special-needs child to camp, it starts with: Let’s do the research. Let’s meet with the director. Let’s find a one-to-one worker. Everything we do has so many more layers to it.

BLOOM: What is the difference between coping and balance?

Amy Baskin: Moms of children with disabilities have more intensive and frequent periods of crisis. It could be your child’s medication isn’t working, or your child has become depressed, or you’re dealing with chronic behaviour. When we’re in crisis, we just cope. We need to get some sleep, to eat, and to have a friend to connect with. But there is no balance. Balance is what we do over time to maintain our physical and mental health because we know the parenting demands are greater and we’re at risk of depression. Balance is about looking after our physical health – sleeping, eating and exercise – and what makes us happy: knowing what you love to do and being able to do it, and having friendships and social connections.

BLOOM: What happens if we don’t pay attention to our own needs?

Amy Baskin: The stresses start to outweigh the joy and meaning we get from our child. We become negative and bitter. Then we have nothing left to give to our kid.

BLOOM: What did you find in moms who coped the best?

Amy Baskin: Their child with special needs was not the centre of their entire family’s life, which is really hard to achieve. Every single decision wasn’t made in light of that child with special needs. The happiest moms often had some kind of paid work. When they returned to work, their life felt more balanced and they had another world outside of their kids. Going to work was a break – a time to free their brain from thinking about their child and to get energized before coming back to the family. Moms who did best were involved in committees and groups that were changing the world to make things better for their kids. They also tended to exercise and there’s all kinds of research on how exercise can boost your energy and mental health. Moms who coped well used humour and took breaks. They went on dates with their spouses, booked child care so they didn’t feel they had to do everything themselves, and surrounded themselves with help – whether extended family, other parents of kids with special needs, or by using funding to hire university and high school students.

BLOOM: Why is it so hard for moms of kids with special needs to take time for themselves?

Amy Baskin: Guilt is a major barrier. I remember one woman at a workshop said: “I can’t even buy myself a cup of coffee because I know that money could go to my kid’s therapy.” People feel guilty leaving their child with someone else. Our society is so focused on helping the child that if a mom does something for herself, there’s a sense that she’s taking away from her child. The opposite is true. We know we have to fill ourselves up first, before we can give to our child. The better you feel physically and mentally and the happier you are, the more you’ve got to give your kids. Balance is not just a frill!

BLOOM: How can a mom take the first step in self-care when she's feeling overwhelmed and burned out?

Amy Baskin: Take baby steps. Look at one small thing you can do for your physical health each day, and add one small pleasure. With physical health, look at the biggest area of need. For example, if you're exhausted, rather than go to bed at midnight, take a bath and go to bed at 9:30. If you never exercise and feel terrible, go for a long walk today. Then add a pleasure: Get that book from the library and try that nice tea you bought and sit down and read for 10 minutes. Or call your best friend. Or do five minutes of deep breathing and visualization.

Have you read More than a Mom? We're looking for a mom to do a short review for the June issue of BLOOM. You can follow Amy Baskin at her blog at Today’s Parent Magazine.

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comments:

Oh, I've been waiting to read this interview! I am shocked to learn: "One study found that parents of children who are chronically ill have cellular content that is like a person 10 years older; stress ages them at a cellular level." This statement makes me wish to do something for parents who need the extra support!

Since the beginning of this year, I've been trying to focus more on me to add balance to what I can give back to my family. I am lucky in that Gabe's needs are minimal, but what Amy Baskin says is very true: I feel guilty most of the time if my life and personal decisions aren't based around Gabriel.

I also find it taxing to be surrounded by "special needs talk" and Amy Baskin gives such a good example about the complexity of a simple task of just being able to sign up Gabe for an extracirricular activity. I even feel like the question "How was his day today?" that I usually pose to his EA at school to be exhausting...

Anyway, I'm slowly building my boundaries, block by block, and I always feel more connected and refreshed after exercising or just being out and about on my own for a few hours.

This is such an important topic! I'm so happy to hear about this book. I feel like I go in cycles of being able to take better care of myself (emotionally and physically) and then something happens and it all falls apart. I definitely feel guilty when spending time on myself because there IS so much to do all the time. I have to change that...

Thank you for sharing this interview. I hadn't heard about this book but am THRILLED that it's out there. It's really lacking in the special needs community - how to practice enough self care so that taking care of our children doesn't deplete us. Instead we take care of ourselves so that we give to our children from our "overflow". It's been a hard lesson for me to learn and I am super excited that there is a book out there to help me even more!!! Thanks for sharing this!

Louise, I just ordered a copy of Jonathon Mooney's book. For some reason Chapters cancelled my order for "My Baby Takes the Short Bus" so I will have to order elsewhere. I'm excited to get caught up in my reading this summer.

Lianna - I was not at all surprised to read that my child is aging me ten years. I had been thinking this since a nurse tried to make me feel sorry for our pediatrician who was unavailable. She said being on call was aging him ten years and it made me aware that she really did not understand the stress that we are under. I didnt' say anything to her but I may print this article for her.

It's such a huge topic and I can personally relate to much that was written above. Also, I'm a task-oriented person who finds it hard to say what I feel. So, I just want to say a big thank you for the interview (because it has helped to verbalise some of my emotions, and because I now know that I'm not alone)!

I hope that this post will also raise awareness of the stresses of parenting special needs kids, among parents of non-special needs kids.

I know I should read the book. the one thing i do that is sort of for me is that I blog and read blogs, but I justify it by saying I get valuable info from parents who know more than I do about how to do this. Right now, I had to go back to physical therapy for my neck and my knee because I have not been up to the physical challenges of following my hemiplegic baby around making her crawl. I gave up exercise when my life got this crazy and my fused neck now objects and needs help. I feel guilty when I go to my own PT because I know the more I make Hannah crawl now the better off she'll be for a lifetime, so how can my needs of today matter enough to get me to the gym? A conundrum wrapped in an enigma!

I wanted to address this question ( and the subsequent answer): "What happens if we don’t pay attention to our own needs?" "Amy Baskin: The stresses start to outweigh the joy and meaning we get from our child. We become negative and bitter. Then we have nothing left to give to our kid." This is so true....but, I think it is important to stress that so much more can happen if we don't pay attention to our own needs!

I found out the hard way the consequences of not taking care of yourself while caring for everyone else! Being the mom of 5 (three with special needs), I realized (almost too late) that if you don’t fit in some time for your own daily renewal, you can’t do your best and continue to provide what you and your family need. It didn’t all hit me until I got so sick that I could barely take care of my children, that I needed to make some changes and take care of me!

I ended up with a diagnosis of diabetes, fibromyalgia, arthritis, IBS, and all sorts of other things. I was taking 30-40 pills a day to keep up. I believe, it was because I let myself get so run down, that my body just gave up. And you know what, I couldn’t even take care of my kids properly by then. So, not taking care of yourself isn’t serving you OR your kids.

I have two at home now (both special needs) and am raising a rambunctious 5 year old grandchild. I have taken better care of myself in the past 3 years than ever in my life….and I feel better now than ever in my life (at 50, I have more energy than I did in my 30s). And yes, sometimes things don’t get done, and sometimes other people have to pitch in, and I can’t work with the school or other organizations as much as I did before. But I was killing myself before.

I hope parents can find some time to take care of themselves. I still feel guilty sometimes, but, you know what? It's not as bad as the guilt of not even being able to get out of bed to take your kids to school and calling in saying *they* were sick. Don't push yourself so far that you have nothing left to give <3

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.